Writing in  the New York Times Motherlode blog, Meera Oliva says she was devastated when she learned prenatally that the child she was carrying had a cleft lip, but her concerns disappeared as soon as her son, Elan, was born. Now that Elan is six months old and about to undergo his third surgery, Oliva says she and her husband feel their journey “has enriched our lives much more than it has taken anything away.” An excerpt:

… From the moment we saw Elan, we were absolutely in love with him, and with his cleft in particular, and suddenly all of the things to come like surgeries and arm restraints and special feeding bottles seemed much more manageable.

… I think the most shocking thing of all to both of us is how bittersweet it feels to have Elan’s lip fixed. To us, his face doesn’t need any fixing. His smile is so sweet and part of what makes it so cute is its imperfection. His cleft feels like a part of who he is, and yet if Dr. Mulliken does his job right, Elan will grow up and never feel like his cleft defines him, and I guess that’s the way it should be.

But its hard to imagine that now. Because for now we feel a little sad to be saying goodbye to this wide smile that we have loved so much these last six months. So we will make sure to enjoy it as much as we can the next few days, and then we’ll get to work on loving his new smile just as much. I’m guessing that won’t be too hard.

From AP/Los Angeles Times:

A report from the U.S. Department of Education this weeks shows that 19 states do not in any way regulate their schools’ use of seclusion and restraints on misbehaving students. And even though 31 states do have some type of policy, the report found, many are weak and do not clearly spell out proper disciplinary procedures for teachers to follow.

Education Seretary Arne Duncan called for the assessment after congressional investigators disclosed evidence of widespread restraint and seclusion of students by school staff around the country, most of it involving students with disabilities. At least 20 deaths and many injuries were attributed to the practices.

For the first time, federal lawmakers are considering legislation that would prohibit restraint and seclusion in most circumstances and require training for educators on effective behavior management. The bill passed the U.S. House Education and Labor Committee earlier this month.

“Schools are the Wild West — anything goes,” said Leslie Lipson with the Georgia Advocacy Office, which is pushing for legislation that would ban both restraint and seclusion in Georgia. “We have seen instances of restraint and seclusion where teachers and other officials have used Velcro, duct tape, hog tying — kids locked in storage closets. All sorts of perversions.”

Related posts here.

New York Times columnist Nicholas D. Kristof examines the question of whether chemicals in the environment may be partly to blame for the proliferation of autism diagnoses across the country. He cites an article by Philip J. Landrigan, just posted online in the peer-reviewed journal Current Opinion in Pediatrics, that says the “likelihood is high” that many environmental chemicals “have potential to cause injury to the developing brain and to produce neurodevelopmental disorders.”

An excerpt:

Frankly, these are difficult issues for journalists to write about. Evidence is technical, fragmentary and conflicting, and there’s a danger of sensationalizing risks. Publicity about fears that vaccinations cause autism — a theory that has now been discredited — perhaps had the catastrophic consequence of lowering vaccination rates in America.

On the other hand, in the case of great health dangers of modern times — mercury, lead, tobacco, asbestos — journalists were too slow to blow the whistle. In public health, we in the press have more often been lap dogs than watchdogs.

At a time when many Americans still use plastic containers to microwave food, in ways that make toxicologists blanch, we need accelerated research, regulation and consumer protection.

From the Boston Globe:

The U.S. Department of Justice is investigating allegations that a Massachusetts school is violating federal civil rights law by using electrical skin shocks to discipline children with disabilities.

The probe follows a 2009 letter of complaint signed by more than 30 disability rights groups alleging that the facility’s use of “painful and dehumanizing behavioral techniques violates all principles of human rights.”

The Judge Rotenberg Educational Center of Canton, southwest of Boston, is believed to be the only school in the country that gives children electric shocks as a form of treatment. Its population of 200 students have such conditions as autism, mental retardation and emotional problems. Roughly half wear electrodes attached to their skin, allowing staff members to remotely trigger an electrical shock through a hand-held device.

The school’s methods have stirred controversy for decades, garnering support from parents and opposition from rights advocates and politicians.

Earlier posts here.

Competing in Olympics, Paralympics with ten percent of his vision

From the Seattle Times, MacLean’s magazine and elsewhere:

Canadian skier Brian McKeever is the first winter-sport athlete ever named to compete in both the Olympic and Paralympic teams. Like his father, McKeever has Stargardt’s disease, the most common form of inherited juvenile macular degeneration. An excerpt:

“There’s not a day goes by that I don’t wish that I saw better,” McKeever, 30, said, talking to a small group of reporters earlier this week. “And yet, it’s made me who I am. It’s a part of who I am and I like the person I am. If that’s the case, then this can’t be all bad. But I certainly wouldn’t wish it on anybody else.”

“… I looked at my dad, who has the same disease, and saw how it never stopped him. I realized it didn’t have to be a limiting factor and it’s best just to get on living life. To be honest with you, I don’t think this has taken much away from me.”

(Photo from Maclean’s)

An excerpt from the Los Angeles Daily News:

None of the 29 Los Angeles Unified charter schools examined in a study released Monday met state and federal standards aimed at making campuses accessible to disabled students, and some even lacked wheelchair-friendly bathrooms and walkways.

The study by a federally appointed independent monitor also revealed that the Los Angeles Department of Building and Safety, which determines whether schools are compliant with these laws, is not making proper inspections.

An independent monitor was appointed in 2003 to oversee a federal consent decree imposed on the school district to improve special education services. An earlier report by the monitor also blasted LAUSD charter schools for enrolling fewer disabled students overall and fewer with severe disabilities than traditional schools.

“This is part of a larger issue … and that is whether charter schools, which are a growing proportion of schools in LAUSD, welcome and are accessible to students with disabilities,” said Independent Monitor Fred Weintraub.

“Our studies have shown that is not currently the case and we’re looking to the district to improve the situation.”

The independent monitor’s complete report can be viewed at www.oimla.com.

See also:

Union-run charter enrolls lower percentage of students with disabilities — New York Daily News

Earlier posts here.

By Lisa de Moraes in the Washington Post:

Actor Patrick Warburton, who voices a character in “Family Guy,” told TV critics Wednesday that he objected to the show’s recent gag about Sarah Palin.

“I know it’s satire but, personally, that [joke] bothered me too,” Warburton said on a conference call to promote his other primetime show, CBS’s sitcom “Rules of Engagement,” which returns for a fourth season on March 1. (On “Family Guy” Warburton does the voice of the wheelchair-bound police officer, Joe.)

“I know that you have to be an equal-opportunity offender, but there are some things that I just don’t think are funny.”

Earlier posts here.